Breaking Down Barriers to End-of-Life Care for Children

Breaking Down Barriers to End-of-Life Care for Children
SUNDAY, Dec. 2 (HealthDay News) -- The death of a child isdevastating for all concerned -- parents, grandparents, siblings, friends,even the child's doctor.
Complicating matters, even though more than 55,000 children die everyyear in the United States, palliative care -- which focuses on the pain,symptoms and stress of life-threatening illness -- isn't widely availablefor those youngsters.
A recent survey of parents who had suffered the loss of a child foundthat they believed end-of-life care for children could -- and should -- beimproved. The parents identified specific areas that need to be changed,ranging from better communication and displays of emotion by medicalstaffers, to respect for the role of the parents.
"The death of a child is totally unnatural," said Dr. Karen Moody,co-director of integrative and palliative care at the Children's Hospitalat Montefiore, in New York City. "There is no context where a child'sdeath is OK. It's a crisis every time for every family."
And, it's not just families that may have trouble dealing with achild's death -- the health-care professionals may have difficulty, too.
"Most clinicians don't have a lot of experience in doing this. They mayfeel uncomfortable or like they failed the patient -- even if they dideverything that could be done," said Dr. Edmund LaGamma, director of theregional neonatal intensive care unit at the Maria Fareri Children'sHospital at Westchester Medical Center in Valhalla, N.Y. "And, whileexperience allows you to get better [at coping or helping the family],it's not common for patients in pediatrics to die. So, pediatric doctorsdon't have as much experience with death as does someone ingeriatrics."
Most pediatric deaths occur in a critical-care setting. And, abouttwo-thirds of the deaths occur after removing mechanical ventilation whilethe child is in the pediatric intensive care unit, according to thesurvey, published in the journal Pediatrics.
Most of those parents responding were mothers, and three-quarters weremarried, with an average age of 42. Nine percent said they had noreligious affiliation, 50 percent were Catholic, 34 percent wereProtestant, 5 percent were Jewish, and 2 percent were Muslim, according tothe study.
The areas identified by these parents as needing improvementincluded:
The need for honest and complete information from care-givers. Theparents didn't want doctors and nurses to keep information from them toprotect them. "What we cannot handle is not knowing what is going on,"one parent wrote.Coordination of care and communication. Rather than having everydoctor caring for a child present their opinion to parents -- whichsometimes differs with other doctors' opinions -- perhaps one doctorshould provide a consensus opinion.Easier access. Parents said they could easily miss doctors on rounds,even if they just stepped out for coffee. Having a regularly scheduledmeeting time would be helpful for parents. Respect for the parent-child relationship. Parents wanted to beacknowledged as a vital part of the decision-making process.
Moody said that what's most important for the child is symptom and painmanagement. "If we could at least eradicate pain at the end of life, wewould be making a big step forward," she said.
For the parents, Moody added, "I'm not convinced there's ever enoughsupport. This is such a painful experience. And, communities don't knowhow to address people who've lost a child. People don't know what to say,so you see an avoidance. It becomes such an isolating experience."
To ensure that health-care professionals don't keep families of dyingchildren at a distance, Moody said they need training. "Often, they[doctors and nurses] feel if there's nothing they can do, they just stayaway. But, you do so much just by being available and making sure thechild is comfortable."
LaGamma echoed that sentiment and said training through conferences isavailable. And, in medical settings where they don't have much experiencewith children's deaths, role-playing exercises can help prepare staffersfor dealing with this difficult experience.
Small things, he added, can make a big difference to these families."Touching them -- putting your hand on their back, having tissuesavailable, taking the time to speak or sit with someone, some people wanthugs, these things all matter," he said.
More information
To learn more about the needs of the family of a dying child, visit theTexas Children's Cancer Center.